Recently I made a medication change (with the help of my psychiatrist), and as you might know from your own interactions with meds sometimes it can cause issues to develop. I was happily strolling along for a couple of months with a few bad days here and there, and then I started to notice the bad days piling up more often. I was really irritable, sad, became unmotivated, and suicide starting sounding better. I became alarmed, because I knew something was going wrong, but how was I supposed to explain to my psychiatrist that “irritable” is a symptom for me?

The problem with mental illness is that even when we fit into a diagnosed category of disorder, we all have our own unique symptoms that we need to pay attention to. I have schizophrenia, but for years I didn’t appear “sick enough” to most doctors, because they expected me to be talking to the walls and completely disheveled. There were times when I was talking to the walls and completely disheveled, but the doctors rarely saw me during those times, so they figured I wasn’t that bad off. Because I could communicate relatively well most doctors dismissed schizophrenia as a diagnosis.

Over the years I have come to realize what my symptoms are (for the most part), and now that I am doing better I can advocate for myself more effectively. However, it still isn’t easy to call up my psychiatrist and say “wow, I’m extremely irritable, this isn’t normal for me, and I need to increase my meds.” Most psychiatrists won’t believe that “irritable” is in any way related to schizophrenia, but for me (and many others) it is. I don’t become psychotic over night, and I don’t believe that I should have to be talking to walls in order to get the help I need. I also don’t believe that people should have to try to kill themselves before mental health professionals take people seriously.

Unfortunately, a lot of mental health professionals won’t take a person seriously unless they are debilitated to the point of needing to be hospitalized. So, as people living with mental illness or people who love people with mental illness, we have to be very proactive about getting the help we need before it turns into a crisis. Think about the good days and what you are like on those days, and compare them to the bad days. What are YOUR symptoms? How do things manifest in your day to day life? You might want to write down what you know your symptoms to be, and take that list with you when you talk to your doctor. It isn’t easy or fun, but we have to advocate for ourselves even when we are not doing our best.

In the end, you know your symptoms the best. Remember that you aren’t “crazy” for wanting to feel better and you aren’t making up excuses. Be pragmatic and straightforward, and get the help you need.

Some of you may remember that I have been getting Haldol Decanoate injections for the past 13 years or so in order to keep my schizophrenia in check. I wrote about it here: https://kristinbell.org/2012/06/14/the-haldol-injections-after-10-years/. Recently Abilify Maintena, the long-acting injectable form of Abilify came onto the market. After discussing it with my doctor, we decided to give it a try. I have been taking the oral form of Abilify along with the Haldol Dec injections for about two or three years with no adverse side effects, and it has really improved my functioning as well. The long term risks of side effects like tardive dyskinesia are much higher with the Haldol than with the Abilify which is one reason why we decided to switch. Abilify also has fewer metabolic side effects (things like less weight gain are associated with Abilify). We are taking a giant leap into the great unknown. I got my first injection of the Abilify tonight. It comes in an injection kit with sterile water that must be mixed with the powder Abilify and then injected. The Haldol is an oil-based mixture that is also injected. I am hoping to also have less sedation side effects from the Abilify. I’m just crossing my fingers that all will go well. I will keep you all updated as time passes. It is also interesting to note that Abilify Maintena has been approved for much longer in many other countries, but it just became available in the US. The US also lags behind many European countries in the administration of injectable forms of antipsychotics. Personally, I think that all people with chronic schizophrenia should give injectable antipsychotics a try. The injections don’t hurt and it is much easier to manage than oral medications. I’m including some pics of what my injection kit looks like too. It looks complicated, but it really only took about 4-5 minutes to administer including reading the directions! I’m saying Hello to Abilify Maintena and goodbye to my old friend Haldol Decanoate!

I have some great news! I was able to ask Dr. Steven G. Potkin, Professor of Psychiatry in the Department of Psychiatry and Human Behavior at the University of California, Irvine (UCI) Medical Center, some questions regarding the negative symptoms of schizophrenia. He is also the Robert R. Sprague Endowed Chair in Brain Imaging. It was a brief, by email interview, but I’m happy to share what I’ve learned with you all! The following is the Q&A:

Kristin:What are negative symptoms?Dr. Potkin: “Negative” does not refer to a person’s attitude, but instead to a lack of characteristics that should be present. Symptoms include reduced amount and content of speech, even when encouraged to interact (alogia), lack of emotional and facial expression (affective flattening), diminished ability to begin and sustain activities (avolition), decreased ability to find pleasure in everyday life (anhedonia) and social withdrawal (asociality). [1][2]

Negative symptoms can appear a few years before other symptoms appear in young adulthood in the so-called “prodromal” stage of the illness.[3]Unfortunately these symptoms often go undetected because they manifest themselves as issues common among teenagers: social withdrawal, problems with school work, irritability, depression and sleeping problems.[4]

Kristin:Do all people with schizophrenia have negative symptoms?Dr. Potkin: No, but at any point in time, negative symptoms can affect approximately 50 percent or more of people with schizophrenia.[5][6]

Kristin:How do negative symptoms affect a person with schizophrenia? How do they affect their family and friends?Dr. Potkin: Research suggests that for people living with schizophrenia, negative symptoms are key factors in poor quality of life as well as problems with personal hygiene, school and work performance, maintaining relationships, interacting within the community, and participating in social activities. [7][8][9][10]

For caregivers of people with schizophrenia, negative symptoms may cause more burden than do other types of symptoms as they see their loved ones life isolated and lacking in meaning or joy. [11]

Kristin:How are negative symptoms currently treated?Dr. Potkin: Current treatments for schizophrenia focus on reducing characteristic symptoms and can include both medication and psychosocial interventions.[12]No effective medication treatment has yet been approved for specific treatment of negative symptoms. Despite progress in the medication side of treatment, there are still unmet needs in terms of symptom control. A large study found that despite treatment, approximately 57 percent of people receiving treatment for a schizophrenia spectrum disorder still had at least one negative symptom.[10]

Kristin:What is the research that Genentech is doing regarding negative symptoms?Dr. Potkin: Researchers at Genentech are pursuing new treatment strategies for schizophrenia, including increasing N-methyl-D-aspartate (NMDA) receptor activity in the brain in order to target the mechanism that may be a common link between the positive, negative and cognitive symptoms of the disorder.[7][9][11][12]

Specifically, through a clinical trial program, Genentech is looking at an investigational medication for people with schizophrenia, including people who experience mostly negative symptoms of schizophrenia, despite taking medication. For more information, please visit www.SearchLyteschizophrenia.com

Kristin:How can family and friends of someone with schizophrenia help someone with negative symptoms?Dr. Potkin: Caregivers can talk to doctors about interventions including medication, psychosocial rehabilitation (work, school, relationships), medical care and wellness, and therapy (e.g. cognitive behavioral therapy and peer support groups), as well as ongoing clinical trials.[13] They can work with physicians to find the medications and non-medicine therapies that are right for their loved one. Different medicines may have different side effects. Caregivers can also consider programs from the National Alliance on Mental Illness (NAMI) including:

Kristin:Do scientists know the biological mechanisms involved in negative symptoms? If so, what are the areas of the brain and/or mechanisms involved in negative symptoms?Dr. Potkin: In the 1970s, the “dopamine hypothesis” of schizophrenia emerged, suggesting the biological basis of schizophrenia was an excess of signaling by dopamine, a chemical messenger in the brain. This theory, however, could not explain negative or cognitive symptoms.[6] In the late 1980’s a newer theory suggested positive, negative and cognitive symptoms could all be due to reduced function of NMDA receptors in the brain. This theory is now known as the “NMDA receptor hypofunction hypothesis.”[6][7][8][9]

Researchers are pursuing new treatment strategies for schizophrenia, including increasing NMDA receptor function in the brain in order to target the mechanism that may be a common link between the positive, negative and cognitive symptoms of the disorder.[7][9][11][12] It is thought that NMDA receptor activity is an important pathway in psychiatric disorders, especially schizophrenia.

End of article.

*Note: I would like to thank Dr. Potkin for helping me put together this interview. This research is very exciting and I hope that negative symptoms can be tackled in this decade! I know how debilitating they can be!

Hey Everybody! I wanted to share with you this cool genetics testing that is available to people. I just got it done, because my nurse practitioner ordered it and Medicare pays for it. (Medicare pays for this testing, because it saves a LOT of money and can save lives!) It is really cool, because it tells you how medications will interact with your specific genetic makeup! It is extremely important if you are taking really any kind of medication. For example, had I known about my results before I took Wellbutrin years ago, it would have saved me from basically having a manic reaction to the medication. It turns out that I metabolize differently than normal on some of the metabolic pathways. This means that I will metabolize the meds on those pathways different than people without this issue. If you have Medicare, I strongly urge you to get this testing done. It could save your life from a bad genetic-medication mistake. I think many other insurance carriers might also pay for it. It also explains why I can take a lower dose of many medications and still get the desired effect from the medication. I would say that anyone who is trying to figure out their psych meds should really get this testing done too. It doesn’t just tell about psych meds though, it tells about stuff involving all other sorts of meds. Seriously, this is pretty awesome! Again, here is the link: http://www.genemedrx.com/

Oh, so I haven’t blogged about this yet, but I went up to Seattle with my family about a week ago and participated in the National Institute of Mental Health-funded research project regarding schizophrenia. I had a really great time and the research team was totally fabulous and wonderful!

You might be asked to participate in an eye tracking exercise like the one shown above. All of the equipment is just used to keep your head still and to track your eyes.

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I just wanted to let you all know about this schizophrenia research study I am most likely going to be participating in and I hope that if any of you out there are interested, you will join in on the study! Well, as you might know, I got a new job at schizophrenia.com. Well, one day I was visiting the site and an ad popped up looking for research participants for this schizophrenia research study! Here is the link: http://www.schizophreniaresearch.net/Involved.asp

Whew! It has been awhile since I have written a tip/trick. The last few months have been crazy, but not really in a good way. Oh well. The tip I’m writing about today has to do with this special time of year for people. This may be rather specific to people who are in the US and/or to people who celebrate certain holidays. Anyway, in the US most people have some holiday that they celebrate or they go on vacation or just have some time off. The major holidays are Thanksgiving, Chanukah, Kwanza, Christmas, New Year’s Eve and New Year’s Day. Again, I know there are more holidays that I’m sure I’m missing, but these are the big ones. So, here is my tip: Continue Reading Tips And Tricks For Surviving A Mental Illness #11…

The following videos are by Rob aka deidzoeb, a person from YouTube. His wife, Melinda, aka melsbasketcase, is also a YouTuber and Melinda has schizophrenia. She does well when she is properly medicated, but a lot of people go on her channel and try to convince her that her drugs are poison and that she should stop taking them. I hope you will watch all three of Rob’s great videos about Psychiatry Denial. He does a great job of showing how psychiatry deniers are simply wrong and how they try to take choice away from people with serious mental illnesses. I have included all three videos here. Please click to find them. Continue Reading Common Fallacies of Psychiatry Deniers…

I don’t know if I am just stating the obvious with all of these Tips & Tricks, but sometimes it is the most obvious things that we forget when illness hits. This next tip is something that I have personally struggled with for years and sometimes a glimmer of it still pops up every now and then. Continue Reading Tips And Tricks For Surviving A Mental Illness #7…

Well, I think I know a thing or two about having a mental illness, since I’ve been dealing with this damn stuff since I was 15-years-old. So, why not share a few tips and tricks I’ve learned along the way? I guess I’ll just put up these when I have time. Here is the number one thing I’ve learned: Continue Reading Tips And Tricks For Surviving A Mental Illness #1…